An advocate for cancer patients has said that patients will "die waiting" for cancer treatments in Ireland after a study showed Ireland has the lowest availability for new cancer medicines in Western Europe.
Miriam Staunton of United Cancer Advocates Network said these patients are in no position to advocate for themselves.
"Prior to these drugs coming on the market, my chance of survival for five years would have been around 5%, versus 50% where we're at now.
"Many patients will die waiting. These patients are not in a position to advocate for themselves. They're sick. They’re dying, so we’re doing it for them," Ms Staunton said.
She added that when she was a patient there were no treatments available to her in the public system.
She said: "They were available in other countries in Europe, which I was unaware of at the time, but I had to wait until I progressed to stage four, which was a year later, to a terminal diagnosis, before I could access the drugs I needed."
It comes as figures show Ireland has the lowest availability for new cancer medicines in Western Europe, according to the Irish Pharmaceutical Healthcare Association (IPHA).
Only 25% of 56 new cancer treatments licensed since 2020 are currently available in Ireland, the association said.
The organisation has cited new data from a study for the European pharmaceutical body EFPIA, which shows that patients in Ireland continue to wait longer than their peers in most Western-European countries to access life-enhancing new medicines.
The survey of 36 European countries, including 27 in the European Union, covers the full four years between 2020 and 2023, analysing 173 innovative medicines authorised for use by the European Medicines Agency.
Of the 56 oncology medicines which were granted a European Medicines Agency (EMA) licence since 2020, only 14, or 25%, are currently available in Ireland.
Watch: Advocate says patients will 'die waiting' for cancer treatments
Almost two-year wait for access
Cancer patients in Ireland continue to wait almost two years or 644 days, post-EMA authorisation, to access newly-licensed medicines.
This is 55 days longer than last year and above the EU average of 586 days, according to Oliver O'Connor, the IPHA Chief Executive.
He said that a new framework agreement this year with the State can be the vehicle through which to reform the reimbursement system to deliver faster and fairer access to new medicines.
The current agreement is due to expire in September.
The HSE said that for around 30% of the medicines, the HSE has not received a formal pricing and reimbursement application.
As result, it said the pharmaceutical industry holds direct responsibility for the non-application of these cancer drugs.
It said there can also be delays on the industry side submitting health technology assessment dossiers and other documents and that this should be reflected in the data published.
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The HSE said for around 40% of the drugs, there is a pricing and reimbursement application ongoing with many having significant delays on the side of the pharmaceutical company.
The United Cancer Advocates Network (UCAN) said there is no early access scheme in Ireland, so Irish patients are forced to wait for full assessments and negotiations with drug companies to take place.
It said that that many patients here are affected by the lack of access and some may not be aware they are missing out on life saving and life extending medicines.
It wants an investigation of early access schemes, a review of the drugs reimbursement process and a more co-ordinated approach at European level.
UCAN said the situation in Ireland had disimproved since the last data on waiting to access innovative medicines was published.
Other Western European countries analysed for the study with higher rates of availability include: Germany, Switzerland, Italy, Austria, Spain, Portugal, Luxembourg, France, England, Denmark, Finland, Belgium, Scotland, Sweden, Norway, Netherlands, Iceland.
Low availability of cancer treatments a 'very disappointing situation' - IPHA head
The Chief Executive of the Irish Pharmaceutical Healthcare Association (IPHA), Oliver O'Connor, has said that a finding that Ireland has the lowest availability of new cancer medicines in Western Europe is "a very disappointing situation" but one which "should be and can be rectified".
Speaking on RTÉ’s News at One programme, Mr O’Connor said that the process to get new medicines approved in Ireland is slow, sometimes taking twice as long as other countries.
"This is in a context where we actually have a law in Ireland which comes from European law, which says that the public authorities in health should make pricing and reimbursement decisions within 180 days," he said.
"That law comes from 2013, and it has never really been implemented, or the system is not designed to try to achieve that, and that's what we believe should change now."
Mr O’Connor said that in many countries, the value for money assessment is "no less rigorous" than in Ireland, yet it is possible in their systems to reach a price agreement on a level that is acceptable to their health services and gives patients access to medicines.
"There has to be a process of value for money, there has to be a price negotiation, but when you break down all the steps involved and you look at what's required in the law... then we're simply not designing our system to achieve that.
"Our industry is committed to making changes to be able to achieve that, and to deliver access to these new medicines if they're approved. No one assumes that every single medicine has to be approved, but if they're approved, they should be available to patients at least a year earlier."
